Identifying unmet information needs of advanced cancer patients in Iran: An in‐depth qualitative study

Abstract Background and Aims One of the main vital needs for self‐care in patients with advanced cancer is information need. Meeting this need has significant positive effects on improving their treatment and care. This study was conducted to identify the unmet information needs of patients with advanced cancer in Iran. Methods This exploratory study was performed from July to February 2021 in the Kerman University of Medical Sciences cancer treatment centers. Oncologists selected eligible patients by purposeful sampling method. Semistructured and in‐depth interviews were conducted with selected patients to collect data. Interviews continued until data saturation. Each interview was audio‐recorded and transcribed verbatim. Results In the interviews, 15 patients with advanced cancer ranging in age from 43 to 65 years participated. The most common type of cancer in women was breast (71.4%) and prostate (50%) in men. The two main categories of “types of unmet information needs” and “reasons for not meeting information needs” were extracted from the analysis of patient interviews, with six and four subcategories, respectively. Conclusion Cancer patients had a large number of unmet information needs. At the time of identifying the unmet information needs of cancer patients, the basic reasons for not meeting these needs should also be considered because cultural differences and social gaps in societies are inevitable.

accidents, cancer has been the main cause of death in Iran. 5,6 In addition to the risk of death, cancer patients, especially in their advanced stages, face psychological problems such as fear, shock, anxiety, and physical problems such as pain from chemotherapy. [7][8][9] Therefore, these patients must obtain more information to deal with the progression of the disease and the resulting problems.
In the advanced stages of cancer, patients often need more self-care information for various reasons, such as tumor growth and side effects from various treatments such as surgery, chemotherapy, and radiotherapy. [10][11][12] Increasing self-care information in them will lead to increased participation in the treatment selection process, increase self-care, reduce anxiety and worry, and thus improve quality of life. [13][14][15][16] Over the past few decades, extensive research efforts have been made to assess the information needs of patients with lung cancer, breast cancer, colorectal cancer, and various types of cancer. [17][18][19][20] The results of these studies suggest that patients often experience more complex symptoms and issues as cancer progress than in the early stages of the disease. The information needs of patients with advanced cancer have often been reported as unmet care needs. 21 According to our research, most of the research has examined the information needs of cancer patients in western countries. 20,22,23 The number of studies in this field is small in Asia, especially in Iran. 24,25 Due to Iran's cultural differences from western countries, this research may not be able to fully cover the information needs of Iranian cancer patients. Because in western culture, studies often pay attention to the physical dimension of care and ignore its spiritual dimension. 26 While in Iran, due to Islamic religious and spiritual ideas, 27 these ideas may be harmful or vice versa useful. On the one hand, cancer patients in Iran may not clearly state their information needs to not worry about their family environment (the harmful dimension of these thoughts). On the other hand, these patients may overcome their stress and anxiety with prayer and mystery and more calmly acquire their information needs (useful dimension of these thoughts).
Also, the ability of cancer patients to take care of themselves is important because it considers the care needs of these patients. For this purpose, several studies using quantitative and qualitative approaches have identified the information needs of cancer patients. [28][29][30] So far, several cross-sectional survey studies have been conducted, which did not identify most of the unmet needs due to the limited number of questionnaire items. 21,28 As far as we know, the available evidence has not explained the needs of patients with advanced cancer in Iran. For this reason, our study used the qualitative method because qualitative studies can deeply describe unknown or little-known phenomena from the perspective of people who experience them in different cultures. 31 Qualitative research is one of the best methods for investigating human phenomena and evaluating different perspectives and perceptions because it is impossible to fully investigate human, cultural, and social dimensions and values using quantitative research. 32 In addition to the above, the increasing incidence of various types of cancer reinforces the need to meet the information needed to control and combat cancer among these patients in Iran. 28 Due to the multidimensionality, complexity and ambiguity in the information needs of these patients, the present qualitative study was conducted by examining the perspectives and experiences of patients with advanced cancer to answer the The research team developed and approved the interview questions framework (two medical informatics specialists and two oncologists). Participating patients were asked questions about the information needed for self-care so that they could share their experiences of ambiguities and issues with self-care during illness.
Interview questions included "What problems did you have as the disease progressed?," "What information did you need to take care of yourself during chemotherapy or radiotherapy?" and "What did you do to resolve the problems?" Due to the prevalence of COVID-19 and quarantine restrictions, each eligible participant was interviewed semistructured and in-depth through social media (WhatsApp video call) by the first author. However, before the start of each interview, a brief explanation about the subject and purpose of the research was provided to the patient to satisfy the patient to conduct the interview. Then, the electronic informed consent form designed by the research members was sent to the patient through social media (WhatsApp). The consent form emphasized the patient's consent to record his/her statements by the research members, the confidentiality of the recorded information and the right not to cooperate at any time during the research without giving a reason. If each patient agreed, the interview was conducted at Data were analyzed using the content analysis method. 33 Copies were uploaded in Atlas.ti8 software and coded by two members of the research. Qualitative content analysis was performed in four stages: "initialization," "construction," "rectification," and "finalization." In the "initialization" stage, two research members read the transcribed data many times to familiarize themselves with the data. In the "construction" stage, the primary codes were classified and compared according to their similarities and differences, and then they were assigned to different groups based on the research questions. In the "rectification" stage, most categories and subcategories were corrected by re-evaluation. In the "finalization" stage, the final report was extracted from the analyses. A summary of the steps performed in this analysis is shown in Figure 1

| RESULTS
The characteristics of the participants are presented in Table 1. The number of participating patients was almost equal in terms of gender.
The average age of men and women was equal (approximately 52 years), and they believed in Islam. The most common type of cancer in women was breast (71.4%) and prostate (50%) in men. Most of them were married.
The codes obtained from the content analysis results were 243 initial codes; after deleting duplicates and similar items, 132 initial codes remained. Finally, these codes were covered in two main categories: "Types of unmet information needs" and "Reasons for not meeting information needs," with six and four subcategories, respectively. The categories and their subcategories are shown in Table 2. Some exemplary quotes, indicated with (Q#) within the text, are available in Table 2.

| Information needs related to treatment methods
The interviews found that the participants were more familiar with different treatment methods through their physicians. Most patients (10/15) chose the appropriate treatment method based on survival rates and costs. Some patients' statements emphasize the importance of paying attention to this information need (Q3, Q4).

| Nutrition-related information needs
All participants reported experiencing several annoying therapeutic side effects, such as loss of appetite, nausea, vomiting, changes in eating habits, and changes in taste (9/15). They wanted to learn more about nutrition. Some also found it necessary to consult a nutritionist for cancer patients. Q5 and Q6 indicate the importance of paying attention to nutrition in these patients.

| Information needs related to the management of physical symptoms
All patients in the present study had advanced cancer and received chemotherapy, radiotherapy, or both. These treatments led to physical side effects such as pain, hand swelling, decreased ability to perform daily tasks, indigestion and hair loss.

| Reasons for not meeting information needs
Describing the experiences of study participants showed that the reasons for not meeting the information needs of patients are numerous and complex. Several factors (such as the patient, the treating physician, family or friends and the community) can lead to unmet these needs.

Low level of health knowledge
One of the patients' concerns was that due to their low level of health knowledge, they could not establish a proper relationship with the medical staff during their treatment process (5/15). This leads to a small and sometimes misunderstanding of the information experts provide. It also limits their ability to search for health information (Q13).

Unfavorable physical condition
Some patients reported experiencing unpleasant side effects such as pain, nausea, and vomiting after receiving chemotherapy (6/15). Therefore, they were not physically good enough to seek information until they recovered from the side effects. This reason is stated in part of a patient interview (Q14).

Religious beliefs
Asking for forgiveness, asking for forgiveness from friends and acquaintances, was one of the mental occupations of cancer patients.
This reduced their motivation to request information (11/15). This reason is stated in part of a patient interview (Q15).
Other reasons for not meeting information needs have been patients' mental preoccupations with death, the afterlife, and human destiny after death at the time of illness (8/15). These cases became more pronounced as the disease progressed and reduced their motivation to obtain information. Part of a patient's interview (Q16) explains this.

| Specialist
Lack of time

Family and friends
Family and friends are important in managing complex diseases such as cancer (8/15). Family psychological support and their appropriate response to cancer affect these patients' quality of treatment and life.
Lack of psychological support discourages the patient's focus and ability to obtain more information about cancer (Q19).

Community
After being diagnosed with cancer, some patients limit their social interactions to avoid unpleasant encounters such as pity, heavy looks, and so forth. (6/15). This reduced their chances of getting information from others. Part of a patient's interview (Q20) explains this.

| DISCUSSION
Promoting health and increasing patient self-care largely depends on meeting their information needs. The first step in meeting these needs is to identify them. Therefore, this study aimed to identify the information needed by patients with advanced cancer. Patients with advanced cancer in this study experienced numerous unmet information needs. According to Hasson, cancer patients in the advanced stages of the disease need to receive more information about treatment and other services than cancer patients in the early stages. 34 Analysis of patients' experiences participating in the present study led to the emergence of two categories: "types of unmet information needs" and "reasons for not meeting information needs." The analysis of the findings indicates that the participants did not have sufficient and appropriate information in various fields such as the nature of the illness, treatment, mental, physical, nutritional, and financial. The cause of their unmet was also related to the patient, physician, family, and community.
Attention to meeting information needs is critical to cancer control. 35 So far, several countries have identified and categorized these needs in cancer patients. [36][37][38][39] A systematic review study for advanced cancer patients categorized all information needs into 12 categories. 21 The present study covered only 6 of the 12 categories.
For example, in the present study, no patient indicated a need for sexual information. While 50% of the male participants in the present study had prostate cancer, we know that prostate cancer treatment significantly impairs male sexual function. 40 The reason for this discrepancy may have been the lack of clear questions about sexual information needs in the present study. In the Boyes study, 37 the questioner explicitly asked patients this question. Another reason may be found in the religion of the people of Iran (Islam) because modesty is emphasized in Islam. 41,42 Due to modesty, many Muslim patients in Iran are embarrassed to express their sexual problems during treatment.
In cancer patients, meeting information needs is one of the most important standards of care and support 34 because having information plays a big role in patients' efforts to fight cancer. 43 Patients who know enough about their disease (e.g., cancer) are better able to control their emotions about it. 43 In our study, the most information needed among participants was related to the nature of the disease (such as the cause of the disease, how the disease progressed, and the recurrence of the disease). However, in the Boyes study, 37 the highest support needed in cancer patients is self-care to meet physical needs and help them adapt to the disease. In Mazhari and Khoshnood's study, 29  In several studies, age, gender, marital status, education level, and income level were insignificantly associated with patients' unmet needs. [44][45][46][47][48] A study in Iran also showed no significant difference between the health information needs of cancer patients with gender, age, marital status, education level, occupation, lifestyle, and rural-urban residence. 49 In our study, more than 70% of all patients were married, half of whom were women. Since married patients have more responsibilities at home, they may have more unmet information needs than unmarried patients. A study in China confirms this. 44 Also, with increasing age, the unmet needs of patients decrease. 48 Many studies have also reported that female patients have more unmet physical needs than male patients. [45][46][47] At the same time, it has been stated in previous studies that men with cancer have more sexual information needs than women with cancer. 50,51 Women have been passive in getting sexual information compared to men. 52,53 This may be due to cultural factors and embarrassment. 54,55 For the treatment and management of cancer, there are various treatments such as surgery, chemotherapy, and so forth. 56 Worldwide, more than 60% of medical treatments focus on cancer. 57 Nevertheless, as in this study and many other studies, 56 can be stated that the most important limitation of this research is that some needs, such as the sexual needs of the patients, should be asked in the interviews, which was in contradiction with the Iranian culture.

| CONCLUSION
The results of the present study show that when addressing the unmet information needs of cancer patients, the underlying causes of their unmet information needs should also be evaluated and considered. Patients may, for reasons such as shyness, refuse to express certain information needs, such as the need for sexual information, or, because of the imminence of death, seek spiritual information instead of information about the disease. Therefore, in countries with Muslim people, counseling and educating cancer patients to improve their knowledge by doctors and government organizations will lead to the empowerment of patients. It will also play a key role in the timely control and treatment of this disease.

CONFLICT OF INTEREST
The authors declare no conflict of interest.

DATA AVAILABILITY STATEMENT
Our data or material may be available from the corresponding author or first author upon reasonable request.

ETHICS STATEMENT
This article was extracted from an independent research project performed at Kerman University of Medical Sciences without organizational support (code: IR.KMU.REC.1399.026).

TRANSPARENCY STATEMENT
The lead author Kambiz Bahaadinbeigy affirms that this manuscript is an honest, accurate, and transparent account of the study being reported; that no important aspects of the study have been omitted; and that any discrepancies from the study as planned (and, if relevant, registered) have been explained.